“We don’t pick problems to research,” says the Clinic for Special Children’s Dr. Kevin Strauss. “The problems choose us. Families come in with questions—‘Why isn’t my child developing properly?’ ‘Why is this happening?’ ‘What causes that?’—and we look for the answers.” Strauss, a Harvard-trained pediatrician, joined the clinic because he agreed with its operating philosophy. “If you want to understand medicine, you have to study living human beings,” he says. “It’s the only way to translate advances in molecular research into practical clinical interventions. You can’t really comprehend a disease like MSUD, and treat it properly, without involving biology, infections, diet, amino acid transport, brain chemistry, tissues and a lot more.”
When Morton began his work among the Amish and Mennonites, fewer than three dozen recessive genetic disorders had been identified in the groups; today, mostly as a result of the clinic’s work, some five dozen are known. Cases of GA-1 have come to light in Chile, Ireland and Israel, and of MSUD in India, Iran and Canada.
The clues come from anywhere: working with one Amish family, Morton learned that a 14-year-old girl had kept a diary while caring for a terminally ill sister. Using information from the diary and other patients, the clinic was able to help map the gene mutation for a syndrome responsible for the crib deaths of 20 infants in nine Amish families—with implications, perhaps, for progress in solving SIDS (Sudden Infant Death Syndrome), which kills thousands of children each year in the larger population.
And at a Mennonite wedding two summers ago, family members rolled up their sleeves to have their blood drawn by Morton, Strauss and a clinic nurse. The team was trying to pinpoint a genetic defect that made the males of the family susceptible to a form of meningitis that had killed two of them. The tests revealed that, of the 63 people whose blood was drawn at the wedding, a dozen males were at high risk, and 14 of the women were carriers. The men were put on penicillin, vaccinated and given stashes of antibiotic to take if they became ill. Shortly after the wedding, the combination of antibiotics and immediate hospital care prevented one man from succumbing to a meningitis attack, possibly saving his life. “Genetics in action,” Morton comments.
But Morton’s approach to identifying and treating a disease is more than mere genetics. On an average morning, the clinic’s waiting room looks like any pediatrician’s office—albeit with most adults in traditional Amish and Mennonite dress—with children crawling about on the floor, playing with toys or sitting as their mothers read them books. The appearance of normalcy is actually deceiving, says Kevin Strauss. “Most of the kids here today have genetic diseases that, left untreated, can kill them or lead to permanent neurological disability.” Parents have brought their children, some from as far away as India, not only for the clinic’s renowned research capabilities but for its treatment. Donald B. Kraybill, one of the foremost scholars of the Amish, and the Senior Fellow of Elizabethtown College’s Young Center for Anabaptist and Pietist Studies, praises Morton’s “culturally sensitive manner,” which he says has won Morton the “admiration, support and unqualified blessing of the Old Order communities.”
The communities’ support is expressed, in part, through an annual series of auctions to benefit the clinic that are held by the Amish and Mennonites across Pennsylvania. These auctions raise several hundred thousand dollars of the clinic’s annual $1 million budget. Another chunk of the budget is covered by outside contributors, and the remainder comes from the clinic’s modest fees—“$50 for a lab test that a university hospital has to charge $450 for,” notes Enos Hoover.
About two years after Sara Glick’s death, Morton, Strauss, clinic lab director Erik Puffenberger, who holds a doctorate in genetics, and researcher Vicky Carlton from the University of California at San Francisco located the precise genetic site of the bile-salt transporter disorder, and devised a test that could tell doctors whether an infant might have it. If the test is done at birth, or at the first sign of a problem, no family will ever have to repeat the Glicks’ ordeal.
Or, perhaps, any other ordeal caused by diseases passed on genetically in the Amish and Mennonite communities. Morton and his colleagues believe that they’re within a few years of realizing a long-term dream: placing, on a single microchip, fragments of all the known genetic diseases of the Amish and Mennonites, so that when a child is born, it will be possible to learn—from comparing a small blood sample from the child with the DNA information on the microchip—whether he or she may be affected by any of a hundred different conditions, thus allowing doctors to take immediate treatment steps and prevent harm from coming to the child.
The clinic’s use of genetic information as the basis of diagnosis and the individualized treatment of patients make it “the best primary care facility of its type that exists anywhere,” says G. Terry Sharrer, curator of the Smithsonian’s Division of Science, Medicine and Society. And he suggests an analogy: over a hundred years ago, when Louis Pasteur’s germ theory of disease replaced the four humors theory, it took decades for a majority of doctors to understand and adopt the new approach. “Most of the switching didn’t occur until the next generation came out of medical school. Something similar is happening now with gene-specific diagnoses and treatment, as the aging baby-boom generation demands more effective medicine. The Clinic for Special Children shows that health care can be reasonably priced, highly tailored to patients and conducted in simply managed circumstances.”
If Sharrer is right, the clinic may be a model for the future of medicine. Even if it’s not, Morton’s contribution has not gone unnoticed. Three years after the clinic opened its doors, he received the Albert Schweitzer Prize for Humanitarianism, given by Johns Hopkins University on behalf of the Alexander von Humboldt Foundation. On being notified of the prize, Morton began to read about Schweitzer and found that the great German physician also came to medicine late, after a distinguished career in music and theology—and that he had established his famed hospital in Gabon at age 38, the same age Morton was when he began the clinic in Strasburg. In a speech accepting the award, Morton said that Schweitzer would have understood why the Clinic for Special Children is in the middle of Lancaster County—because that “is where it is needed...built and supported by people whose children need the care that the clinic provides.” After winning the award, partially in homage to Schweitzer and his love of Bach, Morton took up playing the violin.